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Friday, May 28, 2010

I apologize for taking so long to post an update. It is quite an adjustment having a 3rd child in the family, but she is a joy, even if she is quite demanding at times. Aidan's gotten quite a few snuggles and even a few "kisses" from his baby sister. He's not quite sure what to think of her, especially when she cries. He smiled a few times when we let him hold her.

We took Aidan for botox injections in his lower legs about a month ago, and then he was scheduled for serial casts to help correct his foot-drop. The plan was to do several rounds of casting and injections over the course of 3 months, but after the first casting we came to a screeching halt. Aidan's tone is such that he pushed out of the position he had been set in inside of the cast and in 6 days he developed some pretty nasty looking pressure sores on his heels. I felt horrible. In all the time that Aidan has been home since the accident he hasn't had ANY skin breakdown, not so much as diaper rash. We've been trying to keep the resulting blisters clean and protect them from any further damage, but one of his heels has become infected.

Earlier this week, Aidan started sounding more congested and his oxygen level kept dropping into the 80's, then he ended up with a fever. We figured the work being done in the apartment above us exacerbated his asthma since we all seem to have the scratchy throats and sinus problems too. We took Aidan to the doctor on Wednesday and she gave him a steriod shot and sent us on our way with more antibiotics and oral steroids to take. Hopefully the antibiotic will help with his heels too.

Aside from those things, Aidan has been doing well. He still seems to be alert and aware of what is going on around him. His new "Special Tomato" chair and base and stroller arrived last week. We used the stroller for the first time last Friday at Aidan's school activity day at the park. He fits in it so well and the stroller is incredibly light which is nice for me since his wheelchair is so heavy and difficult to load into the van. This is a picture of him in the stroller. Thank you to the Ritter family for their generous donation that allowed us to get these items for Aidan.

We'd also like to thank Sharon Zambito (www.sugaredproductions.com) for her donation of a $200 gift card to her online store and 5 copies of her newest DVD coming out soon. There was an amazing response and we are so appreciative to everyone who purchased raffle tickets. Congrats to the winners!

Back to Aidan's feet- sorry for bouncing around here- We have an appointment on the 7th with the surgeon who did Aidan's trach and g-tube to discuss putting Aidan on a baclofen pump. Baclofen is a medication that helps with muscle tone but because such high doses are required it isn't very effective taken orally. I will post more about it once we talk to the surgeon and see where we go from here. We have looked into this option, but didn't think that it was necessary for Aidan at the time, but the tone in his lower legs has gotten very bad and for us to be able to correct the problem with his feet we have to do something about the tone first. It's a very difficult decision for me only because it's another surgical procedure and it means putting Aidan to sleep again.

I am also going to speak with the neurologist about trying a ketogenic diet for Aidan. I've done some reading about it helping with seizures and I want to see what he thinks. Our neurologist is known for using this diet to treat kids with autism and other problems.

Anyway, that's what is going on in our lives. Thank you everyone for your support and prayers.